Never quite sure whether this kind of post is cheering or just annoying, but, hey, it might cheer someone up and the rest can move swiftly on. In March 2014 I was diagnosed with 3a OC, with a CA125 of 3,900-ish and the BRCA1 gene. Had a total hysterectomy and weekly carbo/taxol on ICON8.
Now I’m 77 and exactly 10 years NED with no recurrences, (but two hernia ops and lots of mesh, incontinence, neuropathy in my feet and curly grey hair. However, all are better than the alternative!) I will always be grateful to my wonderful NHS surgeon and oncologist and am now involved in several research projects that will hopefully lead to a result like mine. Hugs to everyone in the throes of this truly crap disease. Deb x
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That's fantastic. I was free for 18 years and have often wondered if there any research done into why some of us are lucky enough to get this time. Long may your good health continue.
Hi Lizzieanne, does that mean you recurred after 18 years? That must have been a shock. The research I’m involved with looks at the make up of tumours, to see if they have anything in common and predispose to a recurrence. I think people like us are the exception, not the rule. Deb x
Did take some supplements, vit C which my daughter got me, selenium which had always taken, IP6 but only for a couple of years. Supportive dr and oncologist always positive. I truly dont think any supplements added to my long cancer free time. Was given book You can heal your life and it was right for me at that time and kept me positive. Think it would be good to look into this further. It was a huge shock just grateful for those years visited some lovely places, lots of walking etc
I’m so sorry you’re back on the roller coaster. I’m hoping treatments have improved in the last 18 years - at least healthcare professionals know more about it. You sound like a positive person and I’m sure that helps and I’m sure your daughter is really supportive. Please keep us all posted about the next stage of your journey. Big hugs, Deb xx
Gawd, no, flax oil sounds disgusting! But the Care Oncology Centre seems/seemed to be well run, with possibly useful things used off-label.One of my lovely oncologists was involved. Another oncologist said that the only natural supplements they thought might be useful were ginger and turmeric. Drugs still seem to be best bet.
No but you jogged my memory there was a supposed cure of eating organic cottage cheese and flaxseed oil. I enjoyed it. Put it in a cup and little bit of black pepper, dont think it went towards my long remission but got a taste for this.
Hi Deb, not annoying at all, definitely cheering, especially for a fellow 3a 😊. I hope I will be saying the same in 10 years 🤞. Long may it continue 🥳❤️
Absolutely not annoying at all, I had a year from hell last year but am now NED and on maintenance therapy which probably wouldn’t be available if not for research programs, it’s so encouraging to hear that you’ve had so many extra years without recurrence, thank you 🙏
Only calcium and Vit D in winter. I did give up smoking (🤣), I don’t eat much red meat, don’t drink much and do two dance classes a week. Absolutely nothing special. I know there are lots of different anti-cancer regimens that have passionate followers, but I am just not organised enough!
I had stage 4 in 2000 then five surgeries,2courses chemotherapy,radiotherapy etc over five recurrences then clear since 2012.I am now 73 with a host of problems including two stomas neuropathy,joint paint but consider myself lucky compared to the alternative.My surgeon had never had a case like mine in his career and I still send him Xmas cards to show him that I am still around.
I am so so happy to read this. I was diagnosed 3b OC brca1 positive in Dec 21 and took a work sabbatical from last year. Just got a great offer and thinking I want to get back since I am doing great, feeling great with ca125 under control. I am 47. But you know that voice sometimes pops up warning what will you do if there is a recurrence. I am generally a happy, go with the flow person, so i keep beating up negativity. But posts like yours are the biggest help to actually see there is hope beyond just theory. It helps me take the plunge to try different things!
Congrats ! I’m in my 17th year and currently 11 years NED albeit on a trial drug. I always hesitate to post that info but I do believe it give hope to those having a rough time. Carry on doing what yr doing x
I knowBristol, used to visit quite often, had family there. The best place with info on trials is to look on Cancer Research Uk and search for trials. Also speak to yr oncologist to let them know you are interested and whether they know of any recruiting and also whether any are being planned. Hope you can find something x
I’m currently under The Christie’s in Manchester. My previous 2 clinical trials trials were under Clatterbridge. That’s why I asked were you lived. Be aware that if the hospital you are attending don’t have any suitable trials then you can transfer to another. My consultant at Clatterbridge wanted me to go on a new trial but it wasn’t going to start in time to fit the protocol so she asked if I’d like to transfer to The Christie’s to take part in SOLO2. What hospital are you under?
Hi Katmal, thank you so much for this, I’ll be sure to ask if other hospitals can offer a trial. I’m currently at Bristol BHOC ( part of Bristol Royal Infirmary ).
it’s so uplifting to read posts such as these. I remember when I was newly diagnosed and I trawled the internet for success stories hoping and praying, I would be a long term survivor. (I was diagnosed in 2017 stage 3b). I am so grateful to still be here too but have had ongoing bowel and stomach issues but as the poster says, I’ll take these any day over the alternative. I wish everyone newly diagnosed good health going forward x x
Wonderful Debs l think the newbies want to hear positive stories l most certainly did l was in a dark place just Over 7 years ago. But lm still here and really enjoy life most of the time. Had my ups and downs but l would say always be proactive in your care lm not saying lm totally free of problems lm not but most of the time lm looking forward to another adventure and l keep buying my frocks .Not feeling my best at the moment, so lve been sensible and lm getting myself checked out next Thursday at Christie's in Mcr practice what l preach to not ignore things.
Long may your recovery continue 🙏 love ,& big hugs SheilaFxxx
Great news, but you still have a way to catch up with me! 18 years and counting, and my mum was a 28-year survivor and died of something non-cancer-related.
And as many an oncologist has pointed out, if there really were a miracle cure or diet, we'd all be on it and no-one would have cancer. If there's a particular regime that makes you feel better and doesn't cost a fortune, go for it, but beware of anyone selling supplements - they are in it for the profit, not for the results.
hi Deb. Your post is not annoying at all to me. I am delighted for you and it gives me hope that I might also survive this awful disease for 10 years or more. Congratulations! x
I’m 22 years down the line, stage 1 though, I think! They didn’t exactly say but I had ‘slow growing ovarian cancer in both ovaries and omentum’. I just had a radical, full hysterectomy and no chemo or radiotherapy. Thanks to the NHS team, I’m still well, surviving and feeling ok….Fingers crossed, of course!
Lovely to hear, giving hope to those starting their journey. I’m 7 years since NED scan; being diagnosed at 50 with 1c ovarian mucinous cancer after surgery and then being treated with Carboplatin. So grateful to have these years I might never have had 💕😘
Definitely not annoying at all. Quite the opposite actually. I’m recently diagnosed and living in utter fear of recurrence every day. Posts like this give us much needed hope and optimism for the future. Thanks for posting such lovely news x
Thank you for that. I know I’m probably asking the impossible, but please try not to be afraid. There are huge developments in treatment - there have been so many in just the last 10 years. Try to seize the day. None of us knows how long we have and we should probably try and make the most of what ever life throws at us. And don’t Google!! 😂 Hugs, Deb x
Hello, just also wanted to thank you for this ray of hope in the deepest shadows of the lives of my family atm. My mother was recently diagnosed with stage 3c/4 and we are all at a loss, the anticipatory grief of losing her already feels like a pit.
Quite the opposite of annoying - your post and the many stories of people responding cheered me up this morning (was diagnosed with 3c OC just nine months ago). May you continue to be healthy. Love, Sunitha
I have just been told I have the BRCA1 gene in 48% of my genes. I am having gem/cis chemotherapy and durv immunotherapy. This was all planned when the feeling was I had cholangiocarcinoma-no tissue has ever been found in 4 months of tests.
After as many rounds as I can deal with or are reducing the cancer load I will take a PARP inhibitor.
One specialist was very positive about the prognosis in comparison to it being cholangio. The other my oncologist seemed less positive…..
I think that so much on this really crap journey is down to luck and genes. There are some amazing treatments in research at the moment that will change the landscape, but at present we just have to deal with what has been handed to us and hope for a sympathetic but realistic oncologist. Deb xx
Take it from me, your post is absolutely uplifting and thank you for posting. We ladies need all the uplifting we can get with this horrendous disease. Extremely well done to you and wishing you and everyone all the luck in the world. Love and prayers Lx
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Four Years!
12 years tomorrow
Cancers back after 2 years remission.
Desensitization protocol later today
